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Pregnancy and Parenting Experiences of Women with Twin-To-Twin Transfusion Syndrome: a Qualitative Study

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Pregnancy and Parenting Experiences of Women with Twin-To-Twin Transfusion Syndrome: a Qualitative Study Ren et al. BMC Pregnancy and Childbirth (2021) 21:595 https://doi.org/10.1186/s12884-021-04057-0 RESEARCH ARTICLE Open Access Pregnancy and parenting experiences of women with twin-to-twin transfusion syndrome: a qualitative study Lijie Ren1,2, Cancan Song2, Chunling Xia2, Nan Wang2, Yan Yang2*† and Shaowei Yin1*† Abstract Background: Qualitative research can reflect the actual thoughts and experience of research subjects and can be used to explore the experiences of women presenting with twin-to-twin transfusion syndrome (TTTS) to facilitate the provision of targeted psychological support. Methods: A semi-structured interview method was used to assess the pregnancy and parenting experiences of women with TTTS. Colaizzi method was used for data analysis. Results: Eighteen women participated in the study. We found that women with TTTS during pregnancy experienced persistent worry about their children’s health from the disease diagnosis to the subsequent parenting processes, even in case of minor changes in their children’s health. The lack of an efficient referral process and health information increased their uncertainty about their children’s health. Conclusion: In addition to the children’s health, other difficulties encountered during pregnancy and parenting may aggravate the pressure. Clinicians in the first-visit hospital and foetal medicine centre should improve the referral process and establish a follow-up system to provide women with health information and psychological support. Keywords: Twin-to-twin transfusion syndrome, Pregnancy and parenting experience, Mental state, Qualitative research Background foetuses was about 70%. The incidence of short-term Twin-to-twin transfusion syndrome (TTTS) is a serious and long-term neurological complications in surviving complication of monochorionic diamniotic (MCDA) children was about 3–15% [3–5]. Based on the charac- pregnancy. Without timely treatment, the perinatal mor- teristics of the disease and current treatment status, tality rate can reach 80–100% [1, 2]. The fetal survival women with TTTS may experience serious adverse rate reported after fetoscopic surgery was about 80–90% events such as loss of the foetus, extremely premature for at least one twin, and the survival rate of both delivery and poor foetal prognosis. Previous studies have indicated that women with TTTS may experience anx- iety, depression, post-traumatic stress, and higher par- * Correspondence: [email protected]; [email protected] †Shaowei Yin and Yan Yang contributed equally to this work. enting pressure, thereby necessitating urgent clinical 1Gynecology and Obstetrics Department, Shengjing Hospital of China attention for their mental state [6–9]. However, based Medical University, 36 Sanhao Road, Heping District, Shenyang City CO on current research, the lived experiences and actual 110004, Liaoning Province, China 2Nursing Department, Shengjing Hospital of China Medical University, 36 thoughts during pregnancy and postpartum cannot be Sanhao Road, Heping District, Shenyang City CO 110004, Liaoning Province, definitively determined, which precludes adequate China © The Author(s). 2021 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Ren et al. BMC Pregnancy and Childbirth (2021) 21:595 Page 2 of 8 provision of targeted treatments. In this regard, qualita- consent form and obtained their electronic signature. tive research is a method used to describe the life experi- Data collection and analysis were carried out simultan- ences of research subjects, capturing their emotions, eously. When the data reached saturation, we stopped beliefs, and behaviors. Under a framework of patient- contacting eligible research subjects. And we informed centred treatment and care, qualitative research has re- them that we might quote our conversations in research ceived extensive attention from clinical professionals results, but we concealed the information that could [10–12]. Otherwise, in China, although the regional fetal identify them. In research results, all quotations we used therapy centers have begun to establish referral networks obtained participants’ agreement. Heterogeneity was radiated by their capabilities, it is far from forming an ef- noted among participants, including difference in treat- fective mode of rapid communication and direct referral ment decisions and outcomes, methods of conception, between primary hospitals and fetal therapy centers. A and pregnancy history [14]. The exclusion criteria of this large number of patients are transferred to higher hospi- study included: one twin with malformation; Monochor- tals through ordinary referral channels by primary hospi- ionic monoamniotic twins; twin anemia-polycythemia tals, but these higher hospitals are often not fetal sequence (TAPS); Selective fetal growth restriction therapy centers and cannot complete fetal therapy. In (sFGR); patients with severe pregnancy complications; addition, some patients were only told that they needed acute intrapartum TTTS; the patients not suitable for to visit the fetal treatment center, but they were not fetal therapy. urged to visit the fetal therapy center in time, and they did not get enough information about fetal therapy and Data collection fetal therapy center from the primary hospitals. The A semi-structured interview method was used for data above problems may cause a delay in the patient’s treat- collection. Participants close to the foetal medicine ment. Our study utilized a semi-structured interview centre attended face-to-face interviews. Participants method to explore the experiences of pregnancy and from other cities were interviewed by telephone. All in- parenting as well as the main difficulties encountered by terviews were recorded with the consent of the partici- women with TTTS, to develop possible solutions for im- pants. To ensure the objectivity and truthfulness of the proving the mental state of these women in the prenatal data, interviews were conducted by trained researchers and postpartum periods. [15, 16]. The interviews were conducted according to the following three themes: their experience following a Methods diagnosis of TTTS, parenting experience after childbirth, Participants, ethics, and eligibility and main problems encountered and help required from This study was conducted in a foetal medicine centre of the time of diagnosis to the parenting period. The spe- China, which is a tertiary referral centre for tens of mil- cific questions are presented in Supplementary file 1(Eng- lions of people and provides a number of fetal treatment lish language version and the Chinese language version). services, including fetoscopy laser therapy for TTTS. And we stopped contacting qualified groups when no The hospital database was searched for patients diag- new themes appear during data analysis. nosed with TTTS from January 2018 to December 2019. The diagnosis of TTTS was according to the Quintero Data analysis diagnostic criteria [13]: the maximum pool depth of am- We transcribed the recorded data within 24 h and noted niotic fluid of the recipient foetus was more than 8 cm the emotional state of the interviewee, including laughing, (≥ 10 cm after 20 weeks), and the maximum pool depth crying, pauses, and silence. After the transcription, an- of amniotic fluid of the donor foetus was less than 2 cm. other researcher assessed the recordings and text. Colaizzi All cases were in their second trimester at the time of method was used for data analysis [11]: two researchers diagnosis of TTTS. Ethical approval was obtained from read the text data repeatedly, extracted and coded state- the ethics committee of Shengjing Hospital of China ments related to the research purpose, and handled the Medical University on 18 January 2018. The study was different codes. Then the meaning of coding was summa- conducted according to the principles of the Declaration rized. The theme was refined, and the formation process of Helsinki. We contacted patients by telephone, ex- of the theme was described in detail for the third re- plained the purpose of the study in detail, and invited searcher to verify. The results were then returned to the them to participate in the study. In order to show re- interviewee to verify the authenticity of the content [16]. spect and care to the participant, the interview time is determined by the participant. All the women participat- Results ing in this research received an informed consent form Demographics in electronic version, we started the interview after en- During
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